Hull City Council is taking steps to better support people in Hull with Motor Neurone Disease (MND).
They will also be lighting up civic buildings blue and orange on Friday 21 June to mark Global MND Awareness Day.
It offers the chance to spotlight the challenges of motor neurone disease and express support for those affected locally and around the world.
MND affects the nerves known as motor neurones. These nerves are found in the brain and spinal cord and they help tell the muscles what to do. MND causes weakness that gets worse over time.
There’s no cure for the condition, but there are treatments to help reduce the impact it has on a person’s daily life. Some people live with the condition for many years.
MND can significantly shorten life expectancy and sadly leads to death.
In January, the council passed a unanimous motion to recognise the fantastic work of former rugby league players Kevin Sinfield and Rob Burrow in raising awareness of MND. Rob Burrow recently passed away from the disease and he together with his best friend and former teammate Kevin have helped raise millions of pounds for MND charities.
The motion sets out the council’s commitment to local people with MND. It seeks to introduce policies to ensure people with the disease can live in safe and accessible homes. The council is currently exploring a new financial assistance policy to help people with MND and other similar conditions to obtain the housing adaptations they need more quickly. The current system of Disabled Facilities Grants is also being reviewed, with the aim of implementing changes that would make adaptation work more financially accessible to those who require works to their home.
It is expected that the policy changes will come into effect later this year.
Council staff who work with people with MND have also been signposting to the Hull and East Yorkshire branch of the MND Association. It’s run by volunteers and provides support to people with MND, as well as their families and carers.
The council’s Occupational Therapy team are also linked in with the MND Association.
Liz Jamil, the Strategic Lead for Quality and Partnerships in Adult Social Care at Hull City Council, said: “We hope to continue our progress in supporting the MND community as we work closely with the MND Association. We hope these changes will make life a bit easier for people in Hull with MND.”
Craig Eskett, a local man with MND, said: “Hull City Council’s decision to light up their civic buildings in the colours of MND for MND Awareness Day on Friday, June 21, has been met with support and appreciation from the MND community. This symbolic act not only raises awareness but it also demonstrates the city’s solidarity with those affected by motor neurone disease.”
Tim Atkinson, National Campaigns Manager at the Motor Neurone Disease Association said: “We’re delighted that Hull has taken this opportunity to show its support for local people with motor neurone disease.
“This cruel illness robs people of their independence, their ability to move, speak and ultimately breathe.
“Councils deliver vital services for people with MND and their families and we are always ready to work with them to help them in doing so.”
